Tag Archives: actually autistic

How to smile as your insides scream and you bite the inside of your cheek bloody to keep from running out the door. Bullied kid meant scared kid. Always, always scared. Always. Still, as an adult, always scared. Often a few heartbeats away from running screaming out the room. Only thing keeping it in check? Bigger fear of what will happen if I do. But can’t show you’re scared – bullies are to fear what sharks are to blood. So smile, smile, smile. And if nice fails, act tough and apathetic. Maybe you’ll even fool yourself. And then it’s your fault when adults around you refuse to see what’s happening. “You should be an actor, you’re so good at pretending nothing’s wrong!” they’ll say, as if it’s a compliment. As if they didn’t make you learn to pretend nothing’s wrong. As if it’s your fault you had to learn that skill to survive. As if it’s your fault they refuse to see past the facade they forced on you in the first place.

How to shut down and lose words to avoid screaming exactly what you think about someone at them… because if you do, then you’ll get the shit kicked out of you, and then the school will suspend you for instigating, and then you’ll go home and catch hell from your parents, too, and then they’ll all wonder why you throw up at the thought of going back, and make fun of how school isn’t anything to cry over.

How to accept bad advice with a smile and an I’ll try that next time. How to try something you know won’t work just to satisfy someone who’s convinced it will.

How to restrain yourself from blowing up at them when they tell you that you’re just not trying hard enough, and maybe you just want the attention. How to hurt yourself to prevent yourself from hurting someone else.

How to find a place where you can fall apart safely.

How to hate yourself, your life, the world and everyone and everything in it. But mostly yourself. How to use that hate to power you, how to make hate into a lifeline which keeps you from drowning.

How to bury your emotion in a superhuman workload. Can’t feel if I’m too exhausted to think. Stab of adrenaline just lets me finish the next assignment or shift.

How to act happy when all that is going on in your brain… because anything less is “letting them win” and “being a coward” and “being selfish” and not being resilient enough. Also how to know deep in your hear that the happy mask is walking a tight rope made of knives in a heavy crosswind, if you slip, you fall, and if you don’t, you bleed. And spectators will call it your fault whichever way it turns out.

To not trust anyone. Ever. To assume malice before incompetence, because a pattern of willful incompetence often hides malice, and because people who have a vested interest in not having to do anything would have you believe that ten people who have a combined work experience of more than twice your grandmother’s age are all so staggeringly incompetent that they can’t see a kid getting beaten up right in front of them. Because nobody is that incompetent. Because often the ones bending themselves into pretzels to excuse malice as “innocent” incompetence are the most malevolent.

To isolate before you can be isolated. Because if it’s self-imposed it doesn’t hurt as bad. Because you can’t be betrayed by stuffed animals and books and the walls of an empty room.

Tell me, O Great and All Knowing ABA Person: Where is the “perks” in this? Tell me.

I am addressing an autistic autism parent blogger who made a post to Huffington Post a short while ago. In his post, he argues, essentially, that “both sides” of the autism debate are just as bad as each other, and that we should stop being emotional in our arguments because it’s hard to be eloquent while emotional. He commits the fallacy of the golden mean, and also severely misrepresents the autistic community.

Michael John Carly, you are wrong about us. We do not want to “minimize” the suffering of parents of autistic kids. We want them to stop using their suffering as an excuse to paint autistic people as less-than-human.

We are not all “articulate, verbal spectrumites” – many of our major voices, such as Amelia Baggs, are not able to communicate through speech and instead communicate through AAC. I am usually able to talk, and often at length, but usually not articulately, and often not without being a walking wall of words. I monolog, is what I’m saying. Back-and-forth of typical conversation is hard for me, and the difficulty rises exponentially with the number of people I’m trying to have a back-and-forth dialog with. Writing, for me, is a far more reliable communication method than trying to string together sentences in the heat of the moment while fighting both distraction from navigating body language, manners, etc and my speech impediments.

We do not say that Autism Speaks is “complicit” in murders – and, in fact, ASAN has never, to my knowledge, taken that position. We say, instead, that their hateful rhetoric creates an environment where murders of autistic kids are inevitable – and where, when such murders are committed, more sympathy is given to the murderer than to their victim. Consider the response to the attempted murder of Isabelle Stapleton. News outlets reported this act as a “desperate act,” portraying her mother as a loving woman. Kelli Stapleton became a media darling, even getting an hour-long special on the Doctor Phil show, where most of mainstream media painted the act as Isabelle’s fault for being so difficult, not her mother’s fault for deceiving her, disabling her, and trying to kill her. In fact, the news media focused so much on sympathizing with Kelli Stapleton, that, as of this writing, a Google Search for news about “Issy Stapleton” has a 15:3 ratio in favor of stories focusing on Kelli, and not her victim. To my recollection, roughly 80% of news stories focused on sympathy for Kelli, and of the remaining 20% or so, vanishingly few focused on who Isabelle is as a person, but rather on what Kelli did. We do not say that these murders are Autism Speaks’s acts. We instead criticize them for their role creating a culture wherein it’s more acceptable to give sympathy to the committer of the worst sort of child abuse than to their child, if their child is autistic.

We do not say or argue that parents and families should be without support, as you’ve implied in your piece. That is simply wrong. Autistic people and our allies set up organizations and projects like We Are Like Your Child and Parenting Autistic Children With Love And Acceptance, to try to help those parents in a way that does not demonize and degrade their child. We do not have a problem with “support” for parents, we have a problem with supports coming at the expense of the health and wellbeing of their child.

This cure-at-any-cost mentality is what leads to torture in the name of therapy at the Judge Rotenberg Center, to hopefully well-meaning parents forcing their children to drink bleach and have bleach enemas with Miracle Mineral Solution, and to people trying actively to chuck the single most important public health development in the history of humankind out the window because one corrupt, since struck off the medical register ex-doctor once released an extremely poorly designed case series with the implication that a vaccine may possibly cause autism.

And, yes, Michael John Carly, I will fight against people who call me a tsunami, who portray my brain configuration as a demon, who portray me as not human, who blame their relationship problems on me, who say I’m missing and not living. Because those beliefs are dangerous. Those beliefs lead directly to torturing kids in the name of “treatment” and to giving more sympathy to a person who tried to kill her child than to her child abuse victim. And I – and any other moral and reasonable person – will fight against those things.

The autistic community is not part of the problem, here, Michael John Carly. The people who dehumanize and degrade us are.

I recently read an article by an autism parent blogger who railed against autistic advocates and asked how we dared “interfere” with his parenting by protesting ABA or telling our experiences or questioning the cure narrative. I don’t want to link to that article because the person in question has shown that he has no intention of listening to an autistic person about things, and because I don’t want to invite a hoarde of anti-neurodiversity zealots to my blog. But I thought the question itself deserved explanation, so I figured I’d write something about it.

I interfere, sir, because I grew up undiagnosed. Because my parents, despite their best efforts, made mistakes in raising a child with disabilities. Because my experiences of occupational therapy and remedial training on certain skills ranged from completely useless to downright traumatic. Because I learned the most useful skills from my autistic friends, not from any social skills class or occupational therapy. Because I know I had it relatively easy compared to my peers who were diagnosed in early childhood. Because I don’t want your son to experience what I did.

I interfere because I think you, and people like you, will benefit from hearing the perspective of the receiving end of those therapies and treatments. Because I think you should know red flags of abusive treatments. Because I think that you should be thinking about risks versus benefits, and what kinds of “benefits” are benefits you actually want, and what kinds of risks you’re willing to tolerate for what kinds of benefits.

I interfere because, for me, hand-over-hand (I would like to draw a line at this point between “helping someone, with their consent, to move their hand/body through a motion so they get the feel for it,” and “hand-over-hand” as used in my therapy, which was always “grab the kid, forcibly restrain them, and then force their body to do what you want it to do, when they are actively not consenting or willing, and when they have no idea what is happening or why.” The first is something that I will do, always with consent, with kinesthetic learners. The second is something that was done to me, and it was called hand-over-hand) was uniformly traumatic. It hurt, it took away my autonomy, it was frightening, it made me helpless. I screamed and cried during hand-over-hand, not because I was being willful or defiant as my parents and teachers and therapists thought, but because I was terrified and hurting. And my parents, my teachers, my therapists – they were the ones causing the terror and pain. And they thought they were helping, but they weren’t. I interfere because what I learned from hand-over-hand was not how to do the skills they were trying to teach properly (I am 27 and I still can’t write my name in cursive or sew a button or etc, obviously their occupational therapy to try to teach me cursive and other fine-motor skills failed abysmally), but rather that my pain didn’t matter, that my fear didn’t matter, that my body was not mine, and that might makes right.

I interfere because I remember being helpless and in others’ control, at their mercy. I remember being thought of as willful or defiant or non-compliant or bratty when I was actually scared or in pain or exhausted or just bored to literal tears after hours of monotonous tedium. I remember what it felt like to be locked in an isolation room when I couldn’t do something to others’ satisfaction. I remember what it felt like when my parents flat-out refused to believe or investigate teacher abuse of me (they refused to believe for 14 years, when a classmate of mine told them stories about what she would do to me. And then they blamed me for not telling them, just as they’d blamed me at the time for “making” her abuse me). I remember too well what it felt like when my parents accepted others’ characterizations of me as lazy, or careless, or just not wanting to succeed. I remember too well what it felt like when I was scapegoated for anything that went wrong in an interpersonal situation. And I remember too well what it felt like when other people thought it would be easier to try to restrain and yell and scream and hand-over-hand my disabilities out of me than accommodate them and create an environment in which I could thrive.

I don’t want to call all the shots in your parent-child relationship. I want you to listen to those with relevant experiences- to me, to other autistic people, etc – and to think about what you’re doing. I want you to think about the potential consequences, about what’s best for your kid, and what is a true deal-breaker for you. I want your generation to avoid making the same mistakes with your kids that my parents’ generation made with me. I want you to learn from their mistakes without having to repeat them yourself, and to make the best possible decisions for your kid. And that’s why I “interfere.”

Intro: On Twitter, realsocialskills posted a tweet that led to a conversation about issues with the phrase “behavior is communication,” which is very popular among the autism acceptance movement. Quickly, I found myself frustrated by Twitter’s limited length format which makes it difficult to discuss nuanced issues, so I decided to try to turn the thoughts into a blog post. Please understand that I don’t intend this as a unilateral condemnation of the phrase “behavior is communication” – many autistic advocates use it themselves to good purpose and I genuinely do support the sentiment behind it – but rather I’m trying to explain why the phrase has made me increasingly uncomfortable as time goes on.

I’ve had issues with the phrase “behavior is communication” for a while, and I give realsocialskills (who also has a website/Tumblr, which you should check out, by the way!) credit for inspiring me to look at why this phrase has increasingly given me pause recently.

My view is kind of complex and nuanced as reality often is, so I will do my best to explain where I’m coming from. I’m not against the sentiment expressed by “behavior is communication,” but I find the phrase itself a little troublesome, and I’m going to try to explain why. I’ll start with the positives of the phrase: Why it’s useful and why it expresses something that should be held important. Then I’ll look into my issues with the phrase, and at the end maybe try to suggest something that would resolve it.

The idea behind “behavior is communication” is a powerful one: It is the idea that disabled people – even severely disabled people without the ability to reliably communicate through language – have perspectives, thoughts, and desires all their own and have the right to have those around them understand and respect it. The sentiment is that a person never does anything for “no reason” – an autistic kid who head-bangs doesn’t bang their head on things for no reason, there is a reason for that action and if you can find it and stop the cause, you might be able to make them comfortable enough that they don’t have to bang their head any more. The sentiment is also that there is almost no case where someone has “no way” of communicating distress, discomfort, etc – even if they cannot use language or AAC, they can emote and act in ways to try to get their message across. I want to be perfectly clear: I completely support this sentiment. I agree with it entirely.

Behavior genuinely does offer important insight into what’s going on in a person’s head, especially if that person is unable to express it to you (either due to not having sufficient emotional self-awareness, or due to language issues, or due to not having figured out what’s wrong themselves, or, or, or… there are lots of reasons why someone might be unable – or even unwilling! – to reveal what’s going on inside to others. And being unwilling isn’t necessarily a bad thing but that’s fodder for another post). If I am acting as I often do when I am anxious, odds are fairly good that if you respond in a way designed to reduce my anxiety, my mood will improve, even if I don’t know why or how or even that I am anxious (this happens to me sometimes – emotional self-awareness is not really my strong suit). As my mood improves, I will find it less necessary to do anxiety-relieving stims. This is the general idea behind “behavior is communication.”

And sometimes behavior is communication. Let’s go hypothetical mode that comes to mind because I’ve had it happen quite often in recent weeks: Let’s say I’m hit with a really severe coughing fit because I’m sick and have asthma. I can’t talk at all because I’m coughing so hard, and my face is turning colors and I am generally acting very distressed in my breathing (sitting up very straight, bracing myself against something so I can get a better posture for breathing and coughing, face screwing up in my I-can’t-breathe facial expression, etc). If I can tell this is just a normal illness coughing fit and not a dangerous asthma one, I might nod or give you a thumbs-up sign or wave at you with my hands or something until the fit passes to try to communicate with you that I am not in danger. I can’t talk or use AAC right now, but thumbs-up: I am okay, this will pass. I am uncomfortable and distressed, but not in danger. Please don’t worry.

But, and here is where my issues the phrase begin, sometimes behavior is not communication. Returning to the same coughing fit: I am not trying to communicate with you my distress at my breathing when I cough. I am, to be a bit crude, trying to clear the gunk from my lungs. The purpose of coughing is not communication, it’s to preserve breathing ability. Not all behavior is communication. Likewise, I flutter my hands when I am happy. Is that communication? No. It’s just something I do when I’m happy, it’s how my body emotes. Can you use it as input for your communication with me? Yes. But that doesn’t mean my natural body movements are, themselves, communication. I would flutter my hands just as much if I was alone in a room by myself. The hand flutter is not designed to share meaning or thoughts with you. Sometimes behavior is just behavior: a cough is a cough, a hand flutter is a hand flutter, a fidget is a fidget. It’s not intended to communicate anything with you. There is a reason for it, but that reason is not communication.

That does not mean that non-communicative behaviors should be ignored – if I’m coughing so hard that my face turns purple and I can’t talk, please do check on me! Or if my hands are fluttering in my happy way, it certainly won’t harm anything for you to take that as a cue that I’m happy.

What it means is that not everything I do – or any other person with a disability does – centers around you and trying to impart information to you and trying to get you in particular to do something. And this one of my problems with the phrase “behavior is communication”: it is very self-centered. By re-framing someone’s actions as “trying to communicate something to me,” you are basically writing their entire existence to center on you – your actions, your thoughts, your feelings. And the fact is, someone else’s life does not center on you. It centers on them, and that’s okay, just like it’s okay that your life centers on you.

Another issue is that by assuming that someone is trying to communicate something to you with a behavior, you can blindfold yourself to what is actually going on. Say a person is very upset and crying and melting down and biting their hands. If you assume that biting their hands is attempted communication with you, you might think “maybe her teeth hurt, and that’s why she’s so upset!” or “maybe his hand is sore, and that’s why he’s biting it!” or any number of things centered around the person’s mouth and hands. By assuming it’s a purposeful behavior designed to communicate information, you’ve obscured what’s actually going on: Maybe the person bites their hands when they feel ashamed and is melting down because they accidentally broke something special in another room.

Or, lets say there is a person who has a particular hand fidget before they start working on something involving fine motor coordination. If you assume that the hand fidget is about communicating to you, you might think maybe they’re expressing eagerness for the activity, or maybe think that they’re bored and fidgeting because they don’t want to do it anymore. Or, maybe, you think their hand is uncomfortable and start wasting energy for more sensory-friendly stuff to work with when the current stuff is just fine. But maybe the person has sensory and fine-motor issues, and the hand-fidget lets them know where their fingers are (this one is pulled from me – I have a particular hand fidget that I do before I start fine motor work, and I need to do it so that I know where my fingers are). By assuming it’s all about you, you’ve again missed the point of the behavior.

A third example, one I think I’ve used another incident related to this in a blog post before: When I was a kid, I had a thing where having a sore throat was interpreted by my body as an itchy throat and the only way to make the itchy feeling go away was to do a sort of throat-clearing noise. It was a loud and very annoying noise. One day, I had a really bad throat (it was strep throat, turned out) and I was clearing my throat all the time. Literally, at the height I was probably making the throat clearing noise every ten seconds or so. Imagine that for like eight hours straight. My family was understandably aggravated. My parents got really annoyed – what is it, what do you want, stop making that noise, do you want my attention for something, go to your room if you’re not going to stop making that noise. By assuming it was about them, they missed the fact that I was sick. We spent the whole day fighting over the noise and why I couldn’t stop making it, as my throat got worse and worse and I made the noise more and more. Finally, my mom offered me a sore throat lozenge. I’m not really sure why she did – maybe she thought it would shut up the damn noise if I was sucking on something. Once the lozenge took effect, I realized what the problem had been and told her that my throat felt a lot better now. “Now?” – cue my throat getting looked at and oh, geez, we feel really bad now because your throat is covered in blisters, it must really hurt, no wonder you were acting funny all day!

My point with these examples is that by taking a self-centered assumption, you’re setting yourself up to misunderstand and misinterpret non-communicative behavior. If someone is doing something, it might not be about you.

My last issue with “behavior is communication” is that assuming that behavior is intended as communication neglects the disabled person’s agency, by assuming that everything they do centers on someone else. You are essentially assuming that the disabled person has no life outside of you, and there’s no reason why they would want to do something, unless it applies to you. I’m sure I don’t have to explain why I think that’s a problem, but I will just to belabor the point a bit: People with disabilities are people, with rich and varied lives, both internally and externally. The vast majority of what I – or anyone else in this world – does is things that do not center on one particular person.

My point is this: Behavior can be communication, but isn’t always, and to assume it is always communication is disrespectful to the person you’re dealing with, self-centered, and setting yourself up for misunderstandings. A better way to look at it, rather than the absolute “behavior is communication,” is to think “behavior always has a reason.” That’s an absolute I can get behind – because behavior does always have a reason, even if the reason is really quite simple, like me petting the fleecy blanket because I like the feeling of fleece.

If you have any questions about what either of these are about, please ask on the pages I’ve linked. I normally would be happy to explain, but I am genuinely really, really sick right now and not feeling up to much of anything.

Intro: #HighFunctioningMeans – and its siblings, #LowFunctioningMeans and #FunctioningLabelsMean are trending on Twitter right now. For insight into what neurodiverse people really think of functioning labels, I suggest you check those tags out. I participated in the hashtag, and in my usual verbose way, I realized that I’d completely flood it if I posted all that’s in my brain, but I’m perseverating on it so I decided to turn it into a post.

Content note: There are some offensive views I’ve written about in a first-person sense for reasons of satire. Content note for ableism and abuse.

Like many autistic people I know, I’m prone to looking for the one right social solution.

But sometimes – many times, there is no perfect solution. Especially in tough situations, there’s often times when you can’t avoid pissing someone off – or hurting someone, for that matter. Unless you let yourself be hurt, and in some cases that’s not doable, either. Sometimes you’re stuck in a situation where you have no choice but to hurt someone and it’s up to you to find the least bad option. Good luck.

I’m in such a situation, in my meatspace life. And I can’t talk about it because it’s confidential. But, suffice to say, I’m pretty sure there is no “right solution” to this particular social problem, and that makes it difficult.

Social skills books and exercises and classes and what have you lie. They pretend as if all situations have a right answer and if you know the rules well enough, you can find it. But people aren’t like math. You cannot simply derive what you need from first principles.

You just muddle along as best you can and hope you don’t screw up anything irreparably.